On September 29, 2010, she woke with a fever of 103.6 F. I took her to the doctor, diagnosed with an ear infection. I remember at the time thinking, “Ear infection? She has tubes!” He put her on a liquid z pack and she improved.
A week later, her fever is back. Our though is maybe the antibiotic wasn’t enough and our doctor prescribes another. Her fever once again goes away.
By October 11, her fever is back. Once again we are at the doctor’s. This time her throat looks a little red. Our doctor is concerned that this might be mono. She gets to have blood drawn. As any parent of a child can imagine, this is a horrendous event. She feels so poorly that she doesn’t really fight the technician as I though she would have.
We go home to wait for the results. By Thursday, she is no longer pooping and throwing up. She is laying in the floor screaming. We’re concerned that her spleen might rupture ( a possiblity when you have mono) I carry her to a local urgent care because it’s after hours for our regular doctor. They do an X-ray and decide it’s constipation.
Friday, I give her an enema and start her on the BRAT diet. She throws up once on Friday and once on Saturday.
Sunday, we have scheduled to have family pictures taken with Gressit Labradors. Jesse wants only her father that day, and nothing really makes her happy. When we get home, her fever is back.
On October 18, I call the doctor to schedule an appointment about her fever. As I am on the phone, she starts grabbing her back at her kidneys crying with pain.
At the doctor’s office, he orders an x-ray and ultrasound. The ultrasound shows that the tube on her left kidney is diluted.
We come home, she throws up again. Our doctor tells us that if she throws up again to take her to Children’s Hospital of the King’s Daughters (CHKD) in Norfolk, VA. That night we take her to the ER. She is admitted for dehydration.
We spend the next 2 days at CHKD telling our story and feeling crazy every time we tell it to the residents. They decide that she has a kidney infection and possible reflux into the left kidney. They send us home with an antibiotic and scheduled a VCUG test for kidney reflux for November 2nd.
The antibiotic is for 10 days… 7 days into the antibiotic the fever is back.
Because the fever is back we spend Halloween passing out candy at our house instead of going trick or treating. Jesse and Christine, her older sister, have more fun doing that. In fact Jesse starts yelling at the teenagers passing by, “Hey kid come get your lollipop!” They did get the chance to trick or treat at the Williamsburg Outlet Mall the night before. She refused to wear a costume, so we joked that she was the completely well version of herself… (we thought her kidney was the problem)
On November 1st, we take her to our doctor’s office. He swabs her for strep, which is negative. Gives her a shot of rocefrin. Mike heads for his softball game, and I take the girls home.
As we are eating dinner, Jesse tells me she is cold. She starts shivering. I cover her with a blanket. It doesn’t help. She’s cold… I put her in the shower thinking that will help her warm up. In the shower, she turns gray!
I remove her from the shower and take her temperature rectally while calling the on call nurse. Her temperature is 101.8 F. Five minutes later the nurse calls. She asks me to take her temperature again… 104.6 F. I remember saying no way… I take it again… 104.9 F. I asked the nurse do I have time to get her to CHKD?
We arrive at the CHKD ER 1 hour later. The doctor doesn’t see anything wrong with Jesse ( I gave her Tylenol at home… so temperature is basically gone). He decides to admit her so we don’t have to make another trip there the next day for the VCUG.
Once again we are part of morning rounds, telling our story, and feeling crazy. The one plus is that our resident was the same resident that admit us from the ER on October 18.
The head doctor decides not to conduct the VCUG, but opts for a CT Scan instead. Her reason for not doing the VCUG is that even though they can grow no cultures in her urine or blood, there must be infection due to the fever. Doing a VCUG will only put that left kidney at harm.
On November 3rd, they put her to sleep for the CT Scan. Agonizingly we wait. At 5pm, the doctor comes in. The look on her face is not good… as she tells us there is a tumor in Jesse… tears roll down her face…
After she leaves, surgeons come in to talk about her biopsy. They are going to have to cut her open to see what is going on. They are pretty certain it is cancer. Cancer, my Jesse, cancer. How can she have cancer? This is the kid that wants me! Christine always wants her dad… This is the kid that picks me over Mike. This is the kid I breastfed for 18 months because she refused a plastic bottle.
November 4th, the biopsy. They cut her open from right at her ribs to below her belly button. She was wide awake when they took her through the surgery doors. If your child every has to have surgery, do not ever allow them to do this to them. EVER! I will never ever allow it again. Ever. I cannot tell you the nightmares I still have of her going back through those double doors screaming.
Chris and Erin Larson, my mom, and Mike’s mom sat with us while we agonizingly waited. After 4 hours the surgeon came out to tell us she would be ready to be seen soon. He asked if she had trouble walking or complained of leg pain. She never did. Seeing my mother cry is what gets me… my mother rarely cries.
He then told us that the tumor was so entwined in her body that he almost cut her femoral artery during the biopsy. If he had not stopped to consult the CT Scan… he would have.
Seeing her with all those tubes and monitors was devastating. They do an x-ray to check her lungs while we are in there… the left one is collapsing a bit. The surgeon decides to take her back to surgery and insert a chest tube.
As we wait for Jesse to get to her room, her primary physician calls to check on her. It means the world to me that he and his staff have been checking on her and stuck with us trying to figure out what was going on.
I remember Mike and I taking turns reading to her from Winnie the Pooh… just so she could hear our voice and know we were there. I remember waking up with my head on the bed one time.
Jesse is a strong willed child… I have no idea where she gets it from. By the next day she is telling us no on the morphine. She would rather have an ice pack to deal with the pain than morphine.
It’s an agonizing wait to find out what cancer this is and for her intestines to wake up. They had to move them to access the tumor causing them to go to sleep. How do you tell a two year old they can’t eat? Mike and I take turns leaving the room to grab at least 1 meal a day.
I make the decision to head home that night to see Christine. She is only 20 months older than Jesse… this is just as hard on her because of us being gone. When I arrive home that night, I have this feeling that everything is going to be okay. Hard, but okay.
By the 2nd day after the operation, the pathologists have determined that it is neuroblastoma. A cancer that affects children under the age of 6. If the child is under 1 year, their bodies sometimes have the ability to fight it off on their own. But Jesse is 2… so this makes it different.
Our oncology doctor tells us that he can take her to Vegas and make money betting that it is in her bone, bone marrow, or lungs.
We ask to see the CT Scan. My uncle is a radiologist and we’d like to have him see it as well.
It is amazing to look at this gray evil mass in her body. Her aorta in encased… as we travel through the mass… we see that it is pushing her aorta away from her spine.
The next week becomes this crazy blur of tests and not being able to eat, and wanting to eat. Our first test is a CT Scan of her lungs to see if the neuroblastoma is there. Comes back negative… we dance! We have an audiology test because one of the chemo drugs can cause hearing damage. Really hearing damage! And EKG for a baseline because another of the chemo drugs can cause heart damage.
A bone scan is conducted… comes back negative. Yeah!
A bone marrow test comes back negative!
Her MRI comes back showing it in her spine… but that doesn’t make sense… it wasn’t in her marrow. The doctors explain that MRIs tend to blur tumors sometimes, making it look like it is somewhere it isn’t.
A MIBG test comes back negative! This is a test that scans for the hormone put off by neuroblastoma. It lights up only in her abdomen… No where else! Yeah!
And pathology determines that her MYNC gene is not amplified. I didn’t understand at the time how huge this is. This gene not being amplified means that it will maybe be easier to fight.
On November 14, two days before Christine turns 4 years old, we celebrate her birthday at CHKD. The nurses very kindly let us use the conference room. Christine amazes me by pretend blowing out her candles since lighted candles might set off the fire alarms. She also amazes me with her ability to handle this. She seems content to leave Mike and I to go with her grandma. Then again I have always joked that she would go off with anyone.
On Monday, November 15, 2010, our oncology doctor meets with us. He looks at us and says basically that he would have lost money on Jesse if he took her to Vegas. She falls into the Stage 3 High Risk category only because her cells are undetermined. Basically meaning that they are no mature.
Then he tells us the course of treatment. Six rounds of chemo… with 4-5 day hospital stays. Stem cell harvesting (aphresis) from her body to prepare for the 7th round of chemo, which might mean as little as 4 weeks in the hospital. After that radiation and antibody therapy.
It’s so hard not to look at this little girl and think about everything she is going to have to face… and what damage it might cause her body… but if we don’t she won’t be here.
November 19, 2010 at 7pm EST, we get to go home! For the first time in 3 weeks, Jesse is ours to take home. I was more nervous taking her home that night than when we brought her home from the hospital after birth.
At home, she acts like her old self. She plays with her sister, I catch her hanging off the back of the couch watching TV, she evens pins her sister one time to bite her because she was aggravated ( no worries… Jesse got time out).
Amazingly we get to have Thanksgiving at home. Since her ANC is low, we stay put at the house. Being in public this time of year, just isn’t worth her life. We have plenty of time for that in the future.
One morning after her ANC is back up, she asks me for apples. I cut them up and give them to her. Before she can eat even one, they are covered with her hair. I knew that loosing her hair was coming, but it is shocking how fast it happens. I ask her if I can shave her head. She tells me yes. I get her father’s clippers, stick her in our garden tub, and give her a buzz.
It doesn’t even phase her, until her sister laughs that she has no hair. Quickly I corrected Christine that Jesse has an awesome new haircut. Amazing Chris says she wants one too. At least she wanted her hair cut like that! Jesse looks in the mirror and says, “I have a haircut like Joe – Joe’s!”
The next day Chris has preschool. Jesse and I go to pick her up. The kids don’t seem to notice that her hair is gone, except for one little boy. He starts to laugh at Jesse, but before he can, Chris steps in and tells him that isn’t funny. I was and am so proud of her for standing up for her sister.
At the end on November/ beginning of December, she is readmitted for round 2 of chemo with cytoxin and topetecan. We spend 5 days at CHKD. She gets along beautifully. Seems to be that right after we get out of the car at home, she throws up… and feels better.